I have listened to so many family members struggle with decisions. I have heard them voice their frustrations at being second guessed by uninformed friends and family, and now I find myself in the same position.
Recently, I have tried to provide assistance to a relative with a terminal illness. I have cautiously walked the line between providing practical insight, and allowing the patient to make her own decisions. I donít always agree, but I make sure that she is referred to quality physicians, and gets the care she needs in alignment with her wishes.
As we all know, cancer is a disease that presents complicated twists and turns. And when cancer is advanced, it is more complex because patients have to grapple with hard decisions, and their quality of life can vacillate wildly from day to day.
Interestingly, people who were never involved before suddenly have opinions, ideas, and donít think that enough is being done -- people who are uninformed. I am an oncology nurse, and Iím getting second guessed at every turn. I cannot imagine how difficult this must be for families who lack any medical knowledge.
Family members and caregivers of the terminally ill face difficult decisions every second of every day. They at times feel ill-equipped to make quality decisions, and oncology professionals do their best to provide necessary information.
In the case of terminal disease, all of the decisions have the same outcome; itís just a question of which path you choose to take to get there That is an enormous burden to bear. When others constantly question those choices, no matter how well-intentioned they may be, they are adding to the burden of survivor guilt and frustration that caregivers have to bear.
Iíve always tried hard to be supportive of the person in the awkward position of being the decision maker. I will try even harder now, because now I understand exactly how that feels.
One thing that I have done to eliminate some of the discussion is to make use of MyLifeline.org. Constantly rehashing what decisions have been made and why to every person who calls is exhausting. Using a website like this, which allows a secure means of providing updates, a calendar where others can volunteer to prepare meals or fill other needs, and links to valid sources of cancer information is extremely helpful. Not only that, but when people are questioning and criticizing decisions that are made, it can really throw you. It can make it difficult to know what to say. Being able to take the time to really think about what you want to say and then write it out clearly is a relief. It answers the questions people have without an argument.
No matter what the outcome, not matter what choices are made, it is important that we affirm to caregivers that we know they are doing the best they can do. Chances are they are getting plenty of criticism at home, and knowing that the professionals recognize their efforts can help them cope. Let them lean on you; they may not have anyone else to lean on.